Medical researchers lobby for the right to share your data

Over 60 organisations are calling for the European Parliament to relax its data protection laws and allow medical researchers to share health information across borders. Current EU legislation limits health data sharing for research purposes.

Signatories include the British Heart Foundation, Cancer Research UK and the British Psychological Society (BPS). In a statement the BPS said: ’Personal data provides a vital resource for health and other scientific research to benefit society, and to save and improve lives.’

The signatories are calling on the European Parliament to demonstrate its commitment to research by reaching a new settlement which allows data sharing while respecting the privacy of patients. The statement welcomes European Commission proposals which allow access – for research purposes – to personal health data without individual consent.

Medical data sharing is a sensitive topic. Last year Care.data, the UK health information sharing project, was delayed by six months because the concept was so poorly communicated to the public.

Campaigners for greater access to information are keen to stress the benefits of data sharing. A global study by researchers from Tohoku University in Japan revealed that surgery performed at weekends is more likely to be fatal. In Britain, sharing mortality statistics revealed the extent of the failures taking place at Mid Staffordshire NHS Trust.

But it’s not just patients that are wary. The doctors are too. A survey carried out last year revealed that 40 percent of GPs would opt out of NHS England’s data sharing plans.